From Jameson’s mom:
Jameson is the youngest of our three children. Jameson has an ultra-rare degenerative brain disease called Pantothenate Kinase-Associated Neurodegeneration (PKAN). PKAN is a neurodegeneration with brain iron accumulation (NBIA) disorder. As of now, there is no cure, and this cruel, heartbreaking degenerative disease is terminal.
PKAN slowly and painfully destroys everything except cognitive development. PKAN is so rare and the progression varies to affect people differently, there aren’t really any solid answers for how much time we have, or how Jameson’s disease will continue to progress. Jameson’s symptoms started at birth, which is the youngest symptomatic onset for PKAN.
Jameson has had so many challenges in his short life. Last year he suffered many significant regressions and his health deteriorated. Through all of the darkness, this sweet child is the most resilient, strong, and beautiful human. He loves music, movies, and playing. His smile can truly light up any room, and is one of the best things of every day.
Being a parent of a child with a rare disease is hard. The rare disease and special needs communities are a continuous source of strength, validation, and support. I love my purchases from Littlest Warrior. Jameson and I have the “Tulips, Windmills, and Rembrandts” and “Holland tour guide” shirts, and I love them. I also have the “Advocates like a mother” shirt and it stays in my always packed hospital bag. I feel strength when I wear it. I am his voice, and I will forever continue to advocate for him, and push forward on his behalf.
To read more about our story, and learn more about PKAN, please follow Jameson’s Facebook page @JamesonGreaterThanPKAN
We will be donating all of the funds raised to the NBIA Disorders Association via Jameson’s “Beat PKAN” online campaign website. The NBIA Disorders Association is a nonprofit organization committed to funding grants towards research for NBIA disorders.
September 2020 Donations - Pantothenate Kinase-Associated Neurodegeneration Awareness
Happy September! This month we will be donating 10% of all sales to NBIA Disorders Association via @jamesongreaterthanpkan